Moving Towards the Exit

Today was a big day for Ginny.  You may have seen my Facebook post on how the morning started, but if you missed it, Rachel and I have been sleeping in shifts.  My shift started a little before 4 a.m.  Ginny started whispering to me at about 4:30, and kept talking (quietly) through 7 o'clock nurse's shift change. During rounds we discussed the plan for the next few days, including the plan for discharge.  Yes, I said the "D" word.  She did manage to get a little nap in before too much commotion, but she's still really tired.

All of Ginny's IV medications have been discontinued.  We've switched her to oral methadone and an oral antibiotic. We (me & her nurse Katie) pulled her PICC line this morning.  She still wasn't thrilled about anyone getting near her, especially if they were wearing scrubs.  Slowly she's started to eat, beginning with a Popsicle this morning, and (as a bribe to take her meds) some chocolate ice cream.

In the early afternoon, we got everything straightened out and headed to the 4th Floor (General Pediatrics).  It's nice down here, but we miss all our peeps in the PICU.  Ironically, we feel comfortable up there.  When we got down here, we (me & her nurse Lynsey) pulled one of Ginny's peripheral IV's so there was one less tube sticking out of her.  Now she only has the one left in her foot.  There are a lot of things that we need to do tomorrow, but if we push the issue, I think there is a possibility we could be home tomorrow night.  That being said, I'm pretty sure we will be home Sunday at the latest.
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Ginny has really perked up and is comfortably watching movies (thankfully, it's Wall-E, instead of The Little Mermaid for the 15th time today).  She still has a pretty hefty cough, but she's moving air and exchanging oxygen for carbon dioxide... pretty important stuff.  In addition to the cardiology follow up, she'll start to see a pulmonologist to make sure her lungs are functioning properly and we don't have any other underlying issues, and most importantly we don't have a repeat of this episode. She is a brave kid.

 

Moving Along

I'd like to be able to write something witty and uplifting tonight, but really all of us are just whipped. Here is a quick rundown on Ginny's condition:  She's breathing 50% oxygen through a nasal cannula.  We removed her arterial line and discontinued all of her IV meds, but she still has the IV's in her hand and foot, as well as the PICC line, but the PICC is coming out in the morning after they draw her labs.  (Lord help them if they have to draw more...)   She's getting the CPT chest pounding every few hours which results in a productive cough.  A few days ago we were worried about her not having a bowel movement. Now they're worried about having to paint the room after we leave... (It's not that bad, but things are moving.)  All good things.

She's on methadone for a few more days to ease her off the other narcotics.  Even though she's only been on them a week, she's having visible withdrawal symptoms like the shakes and restless legs, and sometimes we find her just staring off into space.  She's not spoken but a half dozen words since we extubated her last night, but we have gotten her to smile a few times. She gets deathly afraid of anyone in scrubs, and was actually afraid of Rachel when she put on gloves to change a diaper. Considering how much she's been through, I can't say I blame her. 

The fact that she's not speaking, combined with the fact that she's not taken anything by mouth has me a little concerned, but that is probably just due to having a lot of irritation in her throat from the ET tube.  If she doesn't start eating or drinking by morning, we'll have to give her IV fluids and investigate what the problem is.  I'm sure that will work itself out.  The kid just does things on her own schedule.  

The thought in the back of my head was that we could probably be home by Sunday.  That might be a little ambitious by a day, but it could still come true if Ginny decides to cooperate.  But then, why start now.  

Never Dull

Ginny is a very articulate 3 year old.  Today I was reminded of a conversation we had nearly a year ago, a variant of which lasted a couple weeks.  We had attended a reunion of the 4/23 Infantry Recon Platoon at Ft. Benning, Georgia, which was also the place where I took my Airborne training when I was in the Army. Ginny was very impressed with the aircraft mock-ups and loved to talk about them.  She had asked Rachel about why we jumped out of airplanes.  Rachel's answer was something like "Daddy and his friends would jump out of airplanes to go fight the bad men...."  Something like that.  I didn't hear it, but the conversations that followed went something like this: 

Ginny: Daddy, when I get bigger I want to jump out of airplanes.

Daddy: Ok, Ginny.  When you turn 18, I promise we will jump out of an airplane together.

A few days later...

Ginny: Daddy, when I get bigger I want you to teach me how to fight.

Daddy: Ok, Ginny, when you get bigger I will teach you how to fight.  But more importantly, I will teach you to fight when it's appropriate.

Ginny: Ok Daddy. 

A few days after that...

Ginny: Daddy, when I get bigger I want you to teach me how to fight when it's appropriate.

Daddy: ?

Today I told Ginny that I wouldn't need to teach her how to fight.  She already knows.  Today's plan was to wean Ginny off the nitric oxide (done), to get her breathing mostly on her own with only a little support from the vent (done), and to get her meds adjusted and ready for extubation in the morning (done, sort of).  Extubation was supposed to happen just before shift change at 7 a.m.  

As the stuff in her lungs continues to break up, she starts going into coughing fits.  There were a couple in the morning that we suctioned away the junk without incident.  After lunch, stuff got real.  She went into a coughing fit that required multiple passes of the suction tube.  This was accompanied by wild thrashing and a considerable amount of vomit, sprayed all over my arm.  It also required that I hold her down by her forehead while our awesome nurse Tiffany (only one of the awesome nurses we've had - including Pam and Laci and Tony and Renee) ran the suction tube down her ET tube.  Her face was red as a beet, mouth wide open in a silent scream, and tears running down her face.  It was heartbreaking. 

This happened a second time, shortly before dinner, only this time it was Tiffany, me, and Rachel holding her down while our respiratory therapist, Jesse (a dude about 5'10, 250 pounds with legs hanging out of his arm sockets) ran the suction catheter down her ET tube.  At least this time we were able to catch the contents of her stomach with the other suction tube.  After we got Ginny settled down, I heard Jesse say to Tiffany "Damn.  That kid is strong." Told you...

The third episode happened just about an hour ago with me, Rachel, and Pam handling Ginny while Sarah our RT handled the suction.  The green vomit added a nice touch this time.  My mother watched and then helped us get Ginny cleaned up while she gave us all the stink-eye for putting her through that. Then we gave her methadone and she went to sleep.  Mom's comment: "Parenting isn't for cowards." That's when I realized where Ginny gets all that fight.  Rita Horn.  If you're a member of my family, you know exactly what I mean.  If you're not, I can only say that Rita was my grandmother on my mom's side, and simultaneously the sweetest and the toughest woman on the planet, from 1922 - 1997. 

In all the commotion, it looked like Ginny's ET tube had moved slightly.  She was breathing will through the vent - it was only providing 5 breaths a minute, and 45% oxygen.  Saturations were in the low-mid 90's.  All on track.  So, rather than try to re-tape the tube (which no doubt would include a fresh batch of vomit) only to have it removed in the morning, the docs have decided to discontinue her feeds now and extubate in about two hours, provided she stays stable for those two hours.  It's looking good so far, so maybe by morning I'll get to hear my little girl's voice again.  

AS I finished typing this post, Rachel ran into the Ronald McDonald Family Room to get me.  I went into Ginny's room and we removed her ET tube.  Ginny is off the ventilator and doing great.  She's on oxygen support through the nasal cannula.  Maybe we can get some sleep tonight...  

Well, That was Interesting

Ginny had a good night last night. Starting with evening rounds,  we began reducing the amount of support on the ventilator to eight breaths per minute,  and we reduced the NO from 20 to 10 ppm, with instructions to reduce by two ppm every few hours. By the time morning came around,  she was down to two ppm NO.  The secretions in her lungs were breaking up and coming pretty easy when we used suction.  Her oxygen saturation was sitting nicely in the low 90's. We almost thought we could start preparing for extubation. (We'll have to adjust her meds for 24 hours before we can discontinue her sedation.) And then....

Ginny decided she wanted to make things interesting. At 5 a.m. Ginny got her dose of viagra for her pulmonary hypertension.  (You try explaing to your insurance company why you're giving a man-sized dose of viagra to a 3 year old girl.) At 6 a.m. she got her diuretic.  Before 7:30 she had loaded two diapers (just wet). By 8 o'clock, all of her numbers looked good, except her blood pressure was dropping,  and approaching the dangerous range (like64/38...).  Some quick action by the PICU nurses and ARNP to get her some fluids and adjust her meds, and we were back in the green. Kind of a scary 45 minutes or so.   (Not kind of... it was.)

Rounds went well despite her antics.  We are weaning her sedatives, reducing ventilator support to 6 breaths per minute and getting rid of th nitric oxide altogether. (It's called babycrack for a reason.  She might need a little blow now and then before she kicks it.)  It is likely that we are 24 hours from extubation.  That is, if we can get her to stick to the plan.

The Science of Hope II

Yesterday (well, really Monday.  It's 3:30 in the morning on Wednesday right now.) when Rachel and I were leaving the PICU for a quick dinner in the Ronald McDonald Family Room, we ran into someone very special to us: Dr. David Kays.  I gave him a huge hug.  I love that guy for a lot of reasons - too many to list - but really they can be summed up in one photo. 

To really understand the meaning of this blurry photo, taken on Rachel's phone in a restaurant parking lot, you've got to do some background reading.  Go back to the first post on this blog, "First Few Days." I'll wait.... 

In the first days of her life Ginny was very, very sick. Just to keep things interesting, she gave lots of people the opportunity to save her life.  They all came through - big time. That first night it was Dr. Kays' turn. We thought Ginny was going to need ECMO, and when it comes to ECMO, Dr. Kays is the dude. ECMO is a very risky treatment, and he was able to avoid that using a combination of nitric oxide and an oscillating ventilator. He's one of our heroes.  That leads us to the second bit of reading.  Again, I'll wait... 

Pretty impressive, isn't it?  He's saved a lot of babies, and babies are awesome.  

Since the title of this entry is obviously a sequel, you probably went back and read the original "The Science of Hope."  If not, I'll give you a second... 

Yes, you guessed correctly.  That cute kid in the LSU shirt (gag) standing next to Ginny is Joseph. (He's the only boy allowed to stand that close to her - and really only for cute pictures and under close supervision.) Our stay in the hospital has given us some life-long friends.  Joseph will probably rebel against his family and be a Gator when the time comes.  

So by now I'm sure you know why we love Dr. Kays so.  Here's the thing, though: he's not alone.  At UF, he's only one of the world-class physicians that you can run into while roaming the hall.  There are others.  A lot of others.  Dr. Mark Bleiweis, Dr. Jay Fricker... Google these guys.  They're rock stars. They save babies, every day. And they're here in Gainesville.  It makes me proud to be a UF alum, and it makes me happy that I live in Gainesville.  (Don't just skim past that.  I said "world-class".  I mean it. You can count on your hands the number of places on this planet where you can get this kind of care.) 

A lot of you reading this have reached out and offered your help.  Many have brought us meals, or coffee, or run errands for us. We really appreciate it. We're lucky.  We've got awesome jobs - Rachel for GRU and me for Chen Moore - with good health insurance, and we've got a great support network. Not everyone up here has that. Ginny's pretty sick, and this is pretty scary, but there are kids a lot sicker than she is.  Two weeks from now, when Genevieve the Destroyer has returned home to terrorize her little sister and all is back to normal, we'll be looking for ways to help some of the other very sick kids that are here.  We hope you will be willing to join us.  

Slow Progress

5:30 ap.m. Rachel took the shift from about 11 to 4:30, since I had been up since about 2 a.m.  Ginny is so active, despite the sedation,  that someone really has to stay on top of her or she'll get a hold of something somehow. When a new nurse or RT comes on, they always say the same thing, "Oh, she's so cute."  Don't let that fool you.   You might see a cute three year old in a hospital bed, but you let your guard down and you might just find yourself in a steel cage match when you least expect it.

She's been making some progress overnight,  but its been slow. Her oxygen is now hovering around 90 to 91, but that is still on 50% support through the vent, and still 20 ppm on the NO.  They have reduced the vent settings to allow her to breathe more on her own, which she's doing a good job of. We've also added a therapy called CPT to break up the junk in her lungs.  When she was in the NICU it consisted of wacking the crap out of her with what looked and sounded like a rubber mallet.  Now that she's bigger, weve gone industrial strength. Instead of a rubber mallet,  we use a pneumatic device that sounds like a weed wacker and works like a vibratory pavement breaker . It's really good at loosening the junk in her lungs so we can suction it out.  She likes the hammer, she HATES the suction.

8:47 a.m. POOP! Yay, POOP!  Ginny hadn't had one since Wednesday some time.  With all the stress and drugs and everything, it would be normal to be constipated, but we were starting to get worried. This morning she gave up a little stone turd.  It's the little things....  9:25 a.m. Does anyone think it's ironic that today also happens to be World Toilet Day?

Water for People

12:00 p.m.  Rounds were finished a few minutes ago.  Good news. We're going to reduce Ginny's vent setting to 10 breaths per minute to get her to breathe mostly on her own, reducing the nitric from 20 ppm to 10 ppm. It looks like we might not hit our 48 hour goal from yesterday, but we may be able to extubate 48 hours from now. I hope its at night when David is on so he can see her better. 

Ah, Monday...

9:00 a.m.  Rachel and I both slept here in the room in shifts with Ginny last night.  She's been very active, despite what would normally be considered heavy sedation. (My kid's not normal. I've accepted that. Superhuman might be a stretch, but...) She appears to be sleeping much of the time, but when she wakes, she tries to sit up in bed, which is a problem given the breathing tube down her throat and the fact that her hands are restrained. We don't need another self-extubation to set her back, so we kept a close watch.

Ginny is steady.  I'm hesitant to say better, but maybe a little.  Her oxygen saturation is holding at 86% (ish), but on only 50% oxygen support (though still 20 ppm of Nitric Oxide).  The bubble test came back negative (good - and it was pretty cool to watch), and she had her echo.  No news from cardiology, so that probably means no issues on the echo (as we expected).  She's given up a lot of junk from her lungs every time we suction.  The PICC didn't get done yesterday, so the PICC nurse & crew are on their way now.  It's a sterile procedure so we'll have to leave the room.  It gives us a chance to get cleaned up a little and take a walk.  Rounds should begin shortly, but we're at the tail end of the unit, so it might take a little while.  There were a few admissions yesterday and it's getting a little more crowded up here.

12:10  The PICU team just completed rounds.  Ginny is making some progress, but slowly.  Her cultures came back positive for streptococcus pneumonia, which we expected.  We made some adjustments to her antibiotics to treat it more efficiently.  Right now our expectation is that she will be on the ventilator for at least another 48 hours, and then maybe she can move down to the 4th floor.  Her PICC went in without complications, so we won't have to worry about sticking her with a bunch more IV's.

Digging In

We had a lot less drama last night in the PICU.  Ginny tried to stir a few times during the night, but her nurse Pam was on top of it.  I managed to sleep through most of it, thankfully.  She's tried to get up out of bed at least twice this morning, despite the heavy doses of sedatives.  It took three of us to hold her still while we suctioned the junk from her lungs.  She's such a strong kid.

The doctors have finished their rounds for this morning.  On the agenda for today is an echocardiogram to check on her right heart pressures, and a bubble test to see if there is any communication between her left and right atria, and a PICC (peripherally inserted central catheter) line. When we got here on Thursday we had hoped that we could be out of here by Sunday or Monday.  Her condition got worse than we expected, but we thought she could turn the corner quickly once we started the antibiotics. Nonetheless, I think the PICC line just bought us 5 more days or so.  Maybe not all here in the PICU, but still...

Her condition is generally the same.  Her oxygen saturation is hovering in the mid eighties on 55% oxygen through the vent, and 20 ppm of the baby crack (NO).  Lots and lots of junk in her lungs, which we have to suction out every few hours.  She hates that, and I don't blame her, but the RSV creates a lot of secretions in her lungs that have to get out for her to get better.  

Lots of you have reached out and offered your help and we truly appreciate it.  Right now, I think we've got things covered, but in the coming days we might need to lean on you a little. Today we're going to bring Lilly up to visit for a couple minutes, but only from a distance.  Lilly loves her big sister a lot, and I'm sure she's missing her.  We miss Lilly too.  

Saturday Evening Update

Today we've learned a little bit more about Ginny.  She is one tough kid.  We've got her maxed out on sedatives (Versed, Fentanyl, Precedex), but she still keeps waking up, trying to sit up in bed, roll over... that kind of thing.  She does try to lift her arms, but we've got her restrained now to avoid any repeat of last night.  Though we'll still need to keep a close eye on her.

There haven't been many changes in her condition.  She's at 88% oxygen saturation, taking 65% oxygen through the ventalator, in addition to the 20 ppm of nitric oxide.  She's on 3 antibiotics, but we'll probably stop one of those tomorrow, since we're pretty confident the infection is viral, not bacterial. And she's getting some food through her dopoff tube.   

I spent most of the day with Ginny by myself, since Rachel was running a fever this morning.  She's also on antibiotics, in addition to Lilly - who has an ear infection and some kind of viral thing also, but not nearly as serious.  My mom is now here from Connecticut to help out a bit, too.  Thanks so much to Rachel's co-workers at GRU for bringing over lunch.  

I will probably spend the night here with Ginny again tonight.  We're going to have some father - daughter football time and hope the Gators can pull off some kind of miracle.   Hopefully we'll have a boring but productive night of recovery.  

Wake Up, Daddy!

Have you ever been awoken in the middle of the night by an alarm?  Not your alarm clock, but, like, the smoke detector, or fire alarm, or burglar alarm?  The kind of alarm that makes you go from a dead sleep to standing and taking action in less than two seconds?  If you have, you know how my night was.

Yesterday was a boring day.  Rachel and I sat in the room and watched Ginny sleep all day.  She didn't really make any progress, but we had expected her to get worse, so no progress was actually pretty good.  The plan for tonight was for Rachel to go sleep at her parent's house and I would stay here with Ginny.  Around 8 or 9, when Rachel was starting to get ready to leave, Ginny started waking and trying to sit up.  We'd been trying to keep her sedation at a Goldilocks kind of status (not to little, not too much, but just right - that's not as easy as it sounds, because every person reacts differently to different levels of medications). She's on three different sedatives at different doses, and we had tweaked the cocktail so that by 9:30 we thought we had it.  Rachel went home at 10, and I laid on the a somewhat comfortable fold-out chair, and was asleep by 10:30.

Shortly after midnight is when it hit the fan. I was awoken by the crash alarm and the voice of David, Ginny's respiratory therapist notifying all the staff in the unit that Ginny had pulled her breathing tube on her own.  (Keep in mind, I'm sleeping about three feet from her bed). Within a second I was on my feet trying to help David keep her still and bag her with oxygen so that her sats didn't drop too low.  It may have been three more seconds before her nurse was in the room, followed quickly by the rest of the PICU team.  I stood back and watched as they worked within a few minutes they were able to get her re-intubated. It appears that by using her tongue and thrashing her head, she worked her tube out to the point that it was no longer doing what it is supposed to.  I called Rachel as the team was coming in the room, and they were done by the time she got here.  It was all pretty scary. But she wasn't done there....

After about an hour of hanging out, and after the x-ray confirmed her tube was in place, Rachel went to the Ronald McDonald Room to sleep in a slightly more comfortable chair, and I stayed here in the room with "Genevieve the Destroyer".  To make matters worse, Rachel is not feeling well, either.  She probably also has RSV, though it won't be nearly as devastating because  of Rachel's advanced age, and she isn't immuno-deficient in any way.  (Yes, that's an old joke.  That's what you get for putting "40" on every one of my birthday cakes since I turned 36...)

I got a little bit more sleep before Ginny's next attention grab.  About 3 am, I was awoken by David again, with Pam and another respiratory therapist working on Ginny.  Her sats were down to the low 80's but she had bit down on her tube and was trying again to work it out.  This time it didn't take long to get her calmed down again and "sleeping" pretty comfortably.  I got a few more hours of sleep, and now I'm waiting for rounds to hear about today's treatment course.

I've heard from quite a few professionals up here in the PICU that they haven't seen a fighter quite like Ginny before.  She's on a lot of sedative and still manages to  open her eyes and try to fight against anything she doesn't like.  Several folks have commented on her physical strength.  She is one tough little girl.  My conversation with David went something like this: "Where's she get that from?  Which one of you is the stubborn ornery one?" he asked me.  "That's the problem.  It's both of us..." I said.  "Good luck with that when she's a teenager."  Yeah, I know....

Right now she's pretty sedated, but occasionally opens her eyes and tries to sit up and raise her arms.  She's restrained so she can't pull her tubes out anymore (at least not with her hands).  She's on the ventilator with 65% oxygen, and getting inhaled nitric oxide at 20 ppm (I probably have a blog entry from a couple years ago about the "baby crack" effects of nitric...), she's on 3 sedative drips and 3 antibiotic drips, in addition to her IV fluids.  She's got a tube in each nostril - a nasal gastric tube to put things in her stomach, like her oral sildenafil meds, and a dopoff tube that goes past her stomach to the top of her guts for some nourishment and to keep things moving.  It's not a pretty scene, so I won't be putting any pictures up for a while.  I will add this one of her in the ER on Thursday, just to keep it a little cute.

Rachel is going to the clinic today to make sure she doesn't have the flu before she comes back in the room, so it's Daddy & Ginny for most of today.  I'll keep everyone posted on her progress as the day goes on.  Thanks to everyone for their love and support.

This Sucks, Part Deux

Well, I guess it's time to fire this thing up again.

Yesterday at  a little before 10 I got a call from Ginny's daycare. She had a fever and would have to go home.   When I picked her up she certainly wasn't herself.   I called her pediatrician and got the next available appointment at 11:30.  Ginny's had a cough and green boogers for a few days and had just finished a course of antibiotics for what we thought was strep. I thought we'd get some more meds and spend the afternoon watching Peter Pan.  Boy was I wrong.

The pediatrician checked her pulse ox as a matter of regular treatment.  She was at 85%.  "I don't like that number," I told the nurse. "Me either," was the reply.  She was given a nebulizer treatment and oxygen,  and checked again. No improvement. Another nebulizer treatment and more oxygen.  No improvement. So.....another ambulance ride for Ginny and Daddy - this time to the new Shands pediatric emergency room.

If you read back in this blog to the very first entry,  you'll see that people don't always yield to ambulances.  Let me be more explicit now: if you drive like an asshole around an ambulance you are endangering the life of someone very special. Don't do it. Also, if I see you, I will follow you. Your day will not end well. I promise.

Ginny was great in the ED. She seemed like she was feeling better, but her oxygen was still pretty low. She was on oxygen and continuous albuterol through a mask (that looked like a fish face).  We were transferred upstairs to the PICU about 6 pm or so.  Upstairs things got a little different.

Even though she was relatively comfortable, she was getting sick of the mask.  She kept taking it off, so we had to give her the nasal cannula. She didn't like that much either, so she ripped it off after 30 minutes. Her oxygen wasn't getting better, so it gave us a chance to try the high-flow nasal cannula. That lasted a little while before she took that out, too. And again, oxygen was still not improving.  We knew that eventually this could lead to intubation,  but there was one more thing to try: the CPAP.

David was our respiratory therapist last night. He's a big dude, bigger than me, and a veteran of two tours in Iraq and one in Afghanistan. He was no match for Ginny. There was no way in hell anybody was going to strap another apparatus to her face. This all happened about 3 o'clock this morning.  We made the tough decision to quit wrestling with her, sedate her and put her on a ventilator.   She really didn't like the IV in her foot, but in retrospect, probably handled it better than Rachel would have.

The intubation went well, but shortly after her sedation started to wear off.  With her breathing tube still in, she sat up in bed and tried to pull that tube out,  tape and all.   We've adjusted her meds and she's resting comfortably.  We've been operating under the assumption that pneumonia is the primary problem. Not all of the labs are back yet, but just a few minutes ago we learned that one of Ginny's problems is respiratory syncytial virus or RSV. You can read more about it here: http://kidshealth.org/parent/infections/lung/rsv.html

Her symptoms are probably going to get worse before they get better.  We expect to be in the PICU until at least Sunday, most likely longer.  There's a great crew up here, many of whom remember Ginny from her last stay on the 10th floor.  They make it a little bit easier, but I wish we were having a reunion under easier circumstances.

Thanks to everyone for their love and support.  We really appreciate it.